


Adventures of a Girl with "Seeing Things"

by 2agatha_naomi



Category: Original Work
Genre: Autobiography, Bipolar Disorder, Cosplay, Gen, Healthy Relationships, Implied/Referenced Alcohol Abuse/Alcoholism, LGBTQ Character, LGBTQ Themes, Mental Health Issues, Obsessive-Compulsive Disorder, Painting, Quilting, References to Depression, Schizoaffective Disorder, Schizophrenia, Therapy, Unhealthy Relationships, mentions to:, my family - Freeform, my friends - Freeform
Language: English
Status: In-Progress
Published: 2020-10-15
Updated: 2021-02-19
Packaged: 2021-03-08 21:34:36
Rating: Not Rated
Warnings: Creator Chose Not To Use Archive Warnings
Chapters: 5
Words: 8,356
Publisher: archiveofourown.org
Story URL: https://archiveofourown.org/works/27023614
Author URL: https://archiveofourown.org/users/2agatha_naomi/pseuds/2agatha_naomi
Summary: I'm a lot of things: a responsible human being, a daughter, a sister, a total nerd. I can go from tomboy in workout clothes, to glam princess in about 20 minutes. I've been regularly hallucinating since I was seven. My mom and I called them the "Seeing Things." I'm a fairly decent, semi-functioning person, and I refuse to be defined by my illness. My mental illness affects 0.3% of the general population, and it's difficult to find good books on. Thus, my urge to write about my life. I hope it's helpful to someone.NAMI or the National Alliance on Mental Illnesses defines Schizoaffective Disorder as a mix of symptoms typically occurring in Schizophrenia like delusions and hallucinations, alongside symptoms of a mood disorder like mania and depression. It, like many mental illnesses is manageable with medication and lifestyle changes.Here's my story of learning to tame the beast that is Schizoaffective disorder :)
Kudos: 6





	1. who I am, illness aside

**Author's Note:**

> Little nervous posting this, but I've always found a lot of positive people on fanfic sites. I think the summary covers this pretty well. I hope this helps someone. The objective of this is to positively shed light on an illness people don't always hear about, as well as share some general knowledge I've learned in my admittedly shortish life. :)
> 
> There will be some, as the movies call it 'thematic elements' in this, so if I mention something bothersome, there will be a trigger warning in this note. 
> 
> Sources now included :)
> 
> Thanks for reading :)

Hi, my name is…not important. I’m not uncomfortable telling you my name because everyone important to me already knows my story, but I do want to protect the people I love that may not be wanting whoever reads this (all seven of you) to know their lives too. All names in this true life story have been changed to protect the people in it.

Before we start talking about the illness, let me introduce myself.

I’m a woman! A somewhat reasonably attractive one or at least I hope son. I’m twenty-seven. I love my whole family from my parents, to my older sister, to my many extended relatives. I have a friend out of state who I love to absolute death (she actually just moved back, yay!) and a few really awesome friends in town that I love hanging out with. You know who you are, and I love you!

I have a lot of pets in my household, but my crooked tailed, black kitty cat, and our cuddly and feisty Jenday conure are my favorites. The cat is about half crazy, but a total love, and the conure, will sit on me for an hour at a time just relaxing and cuddling. He bites my friends sometimes though, so we are working on that!

I have a lot of hobbies. I am creative and I like quilting, cooking, painting ceramic figurines, watching superhero movies or anime, and cosplaying. I’m good at these things too, and I find a lot of joy in them. The more freedom I have to be creative and inventive the better!

I like to cook, and am getting better at it! I like cooking things like lemon garlic chicken, crispy chicken wings, stir fries, and anything with white rice. I’m careful with the rice, however, because I’m following a low carb and low sugar lifestyle. I’ve lost thirty-nine pounds so far! My cholesterol and blood sugar have never been better, I’m devoted to my long walks and my near daily cardio, and I’m really proud of myself for improving my health!

A big hobby of mine is quilting. I like to donate quilts to the hospice my late paternal Grandfather lived at before he passed away. They were so good to him in his final days, and I want to repay them. I’ve donated a lot to other facilities as well, to victims of fires, stuff like that. I want to give back to the community. While I was in between jobs, I sold quilts and custom pillowcases too. Quilting has always been something I’ve done ever since my mom taught me, and be it for charity or money, I love doing it. Coming up with the designs for quilts is the best part! I really enjoy creating colorful things. I have five pillows on my bed (I know that’s excessive) and each one has a different case. None of them match each other, and I love it!

I love painting, both canvas and ceramic figures, but I like ceramics a bit better, because they are easier for me to paint. I just get stumped sometimes; making the canvas paintings match the image in my head is tricky. I tend to stick to ceramic figurines for that reason. I just love making cute little knickknacks! I have trouble getting their tiny faces to look perfectly symmetrical, but I get better every time I do it. Practice makes perfect! Actually, I never liked that saying. Nothing is ever truly perfect. They should say ‘practice makes improvement.’ That’s better!

I am also very interested in some nerdy things. I mean you could call it nerdy, but most everyone I know likes anime or comics! My favorite animes are Fruits Basket, Yuri On Ice, Durarara, and Fullmetal Alchemist Brotherhood. Go watch them! Right now, you won’t regret it!

My favorite comic book characters are Harley Quinn, Poison Ivy, Deadpool, and of course, the Avengers. I have cosplayed some of them! Cosplay is a somewhat nerdy hobby where you dress up as a fictional character and go to Comic book or Anime conventions as that character! It’s a lot of fun, and I have cosplayed as Poison Ivy from Batman, Belle from Beauty and the Beast, and Babydoll from Suckerpunch. Some I make, and some I just assemble or buy. It doesn’t really matter as long as I am having a good time doing it.

I have some strong core beliefs, the main relating to mental health. We need to break the stigma of mental illness. Keeping things inside can kill. I am open and upfront with talking about my struggles, even though it’s hard, because I know it helps people. If my story involved just me, I would put my name on this. I would put my picture. You’re going to read about me in episodes doing some pretty scandalous things, but I don’t care what people think of my symptoms. The name changes are for the people in my life who need privacy. My point is that you shouldn’t be ashamed to tell people things. If people could tell each other things, even when they weren’t flattering, they would get help and less people would kill themselves, or engage in dangerous behaviors, like drugs and alcohol.

Breaking the stigmas about mental health issues is the only way to protect this fragile group of people. Having a good support system is everything. Having a mental illness is NEVER your fault and they are manageable a vast majority of the time. Don’t ever give up <3

Something that has always helped me is my faith. I believe in God. My family is Christian, and I am too, although I don’t go to church very much anymore. I’m still kind of growing spiritually, and finding my own way in the world. I want to be more comfortable with myself, and have a relationship with God and sometimes I struggle between my own personal values and beliefs and how they relate to religion. I also hear voices, which becomes a big confusing mess when I’m not able to tell the difference between my psychosis and what I believe. I’ve recently started to believe that God doesn’t actually ‘speak’ to you. You might pray and then later get an idea, and that’s the way God guides you. When you add auditory hallucinations to that mix it can be extremely confusing. I still believe in God, and try to make sense of things the best I can.

My therapist told me when we discussed my religious delusions that praying should bring me peace, and that if I feel super intense when I do it, that it might be my illness. That was incredibly helpful.

I know some people of faith feel uncomfortable with gay people, but LGBTQA rights and human rights are also very important to me. I’ve had relationships with men and woman, and it’s entirely possible that this is one of reasons I used to struggle with my faith. I know now, that it’s like Lady Gaga says “God makes no mistakes”.

I have no issue with people being who they are. Any healthy and consenting relationship is fine by me; gender and orientation aside! No matter who you love, or what you identify as, you deserve respect and to be who you are without persecution. Being gay or bi, or transgender or asexual even non-binary is ok, and if someone makes you happy, be with them! Don’t let yourself be bullied into being someone straight, if that’s not who you are or want to be.

People bully other people for a lot of reasons, ranging from everything from their orientation, their race, their gender, circumstance, their income, conditions they have, even their weight. I believe this is completely unacceptable. It’s one of my core beliefs that everyone deserves to live their lives without being bullied.

My mix of somewhat conservative religious views, and my somewhat liberal humanitarian views, make me a complete split ticket voter. I like to see both sides of an issue fully before I decide what I think. I watch more than one news channel so I can observe the full spin put on the same story. I don’t fit neatly in with anyone when people talk politics because I can almost always see both sides to the same issues once I think about it. Because of this, I tend to avoid political discussions.

I believe in clean, healthy and sober lifestyles. There’s no other way for me. I don’t drink, don’t smoke, and I eat low carb, low sugar, high protein. I work out five days a week. Nothing else has worked for me, so I commit to it. I did the exact opposite for a long time, and I didn’t like how I felt when I was up all night taking shots and eating crap so I changed my behavior. If something doesn’t work for you, then don’t do it!

That’s one of my general big beliefs. If you want something, go for it. Make your life work for you, do whatever it takes! Make your life your bitch!! In all seriousness, take charge of your life. You deserve to live the way you want to live.

One of my biggest philosophies is that to a certain extent most people can change their behavior and improve their lives, even if they’ve been a scummy jerk, or very dysfunctional for a long time. It’s not too late until they bury you. I have an overall positive attitude, or at least I try to!

I’m not always positive. It’s not easy. Sometimes I can be quite negative. I have a lot of blessings, and a wonderful family, but my life definitely has not been easy.

The best place to start is typically the beginning, so here goes!

I went to an elementary school near my house, then to a middle school next door. Not a super small town, but small enough that it’s super easy to run into people at the store.

I had a lot of great teachers through my whole K through twelve education. I appreciate all of them for guiding me through school and helping me grow as a person.

After I graduated high school, I saved up money to go to beauty school by working at a warehouse job, and I successfully became a Nail Technician. I was so proud of myself! At another time, I was also a department head at a grocery store. I’m a hard worker, and I _do_ want to work.

However, I am not currently working. About two years ago, I applied for disability at the suggestion of my doctors. I have a mental health condition called Schizoaffective disorder. I also have Obsessisve Compulsive Disorder, or OCD, and I occasionally experience Vasovagal and Convulsive Syncope. By occasionally I mean over a dozen times for the former, and five for the latter. If they could stay at those numbers, that would be excellent. 

I decided to write a bit on these conditions and how they affect me. I am not medically trained, and I am not a doctor in any way, but I wanted to define them simply before continuing on with the story. I may not be an expert but I did TONS of research for this. I will site sources. 

I introduced myself the way I did, hobbies and values first, because my illness will never be the thing that represents me. I am so much more than a diagnosis. It does not define me, even though it’s a big part in my life. People should know me as a person first and foremost.

I’m considered high functioning for someone with this disorder, which is why I’m writing this. I have a self-awareness that a lot of people who experience psychosis don’t have the luxury of having. It’s for this reason that I feel morally obligated to share my experience, just in case it helps anyone else! I know a lot of people don’t have this exact disorder, but seeing as it encompasses a lot of symptoms, it may just help someone, or even just pass along general life skills I’ve picked up over the years.

Let’s get to it!


	2. So what is Schizoaffective Disorder?

**Notes for the Chapter:**

> I am not a doctor. Everything in this chapter is thoroughly researched, and based on experience :) It feels deeply personal, to write and publish something like this, but I am quite hopeful that it may assist someone and that at the very least, I will find some sort of peace in writing it. 
> 
> Please feel free to comment any questions or feedback, and enjoy if you can :)
> 
> My sources for this chapter are in the end notes. Thank you :)

NAMI, also known as the National Alliance on Mental Illness, describes Schizoaffective Disorder as kind of a hybrid of Schizophrenia and a mood disorder, such as Bipolar Disorder.

Affecting 0.3% of the population, men and women can both have it pretty equally, but childhood onset is more common with males, so my case of a female childhood onset, is perhaps a bit odd.

Some examples of common symptoms of this illness are psychosis, mania, depression, and mood swings. Psychosis can include things like hallucinations, delusions, which are false beliefs, and paranoia in general.

Psychosis can entail hallucinations, which can be visual, auditory, or tactile, which are the kind where you can feel a sensation that isn’t real. I experience visual about the most, and auditory second, and occasionally during great distress, tactile hallucinations. Recently open switching anti-psychotics, I saw less visual, and experienced more auditory hallucinations. Why this is that way, I am unsure. Either way, it’s ‘normal’ for me.

My most common visual hallucinations are ghost like, demon like, basically monsters. I’ve had both ‘original characters’, and characters from scary movies. They aren’t terribly solid for me, typically, I don’t literally see something as clear as I see something that’s actually real. They usually appear quickly and once I get a look they are gone, and they occur most frequently when I am in an episode, or getting up at night to perhaps get water or relieve myself.

My most frequent auditory hallucination are where I ‘hear’ God speaking to me when I pray. Sometimes it’s confusing, because I’m not entirely sure what I believe, since I am simultaneously religious and aware that I have psychotic tendencies. I don’t typically hear someone as clearly as it was spoken aloud. It’s more like a loud thought that doesn’t belong to me. It’s a thought that is simply not mine, which typically causes me distress, and often tells me bad things will happen to myself or my loved ones.

My tactile hallucinations currently occur most frequently in conjunction with a visual hallucination. I will ‘see’ a large worm or centipede crawling on me, usually in between my fingers, and I can swear I feel it. I’ve also felt extremely cold sensations before, accompanied with a visual ‘character’ telling me it was going to freeze me. When I recently switched antipsychotics it got rid of my tactile halluincations, and most of my visual ones, but left a lot of auditory. Why that was, who knows. I’m just glad it’s a little better.

I had a tactile hallucination, I believe, several years ago during an uncomfortable discussion where I felt like I was being choked. I’m sure being so anxious at the time contributed to it as well. I’ll go into greater detail on this specific incident later on.

Tactile hallucinations are not my favorite. I’ll even say that they are gross, but if I distract myself, I feel better. Having a healthy mindset about my hallucinations helps me cope better with them. I am generally able to tell what’s a hallucination and what’s not if I am taking my medication. I have pretty good awareness of my illness, and a sense of logic that many people with psychosis do not have the luxury of having.

Delusions are of course naturally, a bit trickier, but my therapist has been attempting to teach me how to recognize when I am experience them, to some success.

Psychosis, sucks, but I can work around it.

There is additionally a type of psychosis that people can experience while on certain drugs or when experiencing symptoms of withdrawal. While it is different than the psychosis from a mental illness, it can interlap, because some people with mental illnesses self medicate with both illegal and prescribed drugs. I’ve never done ‘hard’ drugs, but it’s important to know that there is a difference between drug-induced psychosis and the kind I experience.

Another type of psychotic symptom is a delusion. Delusions are false beliefs, things that someone thinks are happening that aren’t. I once believed that my hallucinations were demons. I was off my meds (which wasn’t good) and I thought that what I was seeing was, in fact real and out to get me. I behaved in erratic and impulsive ways in order to escape the ‘demons.’ It took me a good five or six years back on my meds to realize that I was mistaken, and that my experience was in fact a delusion and not a supernatural event.

I have believed that I was to be arrested before, without committing any sort of crime or wrongdoing, having dreams where the cops showed up at my house to confront me on things I did not do, which caused me to wake up in a panic, and experience great distress.

I don’t know if I have any current delusions, but my mom will sometimes say I have a ‘false thought’ and I sometimes trust her enough to believe her. I have pretty good self-awareness, in my humble opinion, for someone who experiences delusions. My self-awareness of my illness has been key to be treatment, and is likely a result of me starting medication so close to my onset of illness.

Paranoia, the other psychotic symptom, relates to my delusions, and refers to the fact that I sometimes feel persecuted, by my hallucinations and by the people in my lives. I once believed in the conspiracy that they, the hallucinations, were in fact after me. I have also thought people ‘hated me’ and were going behind my back, when I’m pretty sure now that they were just trying to figure out my sometimes strange and erratic behavior.

I have also been known to believe in secret messages, that I was receiving messages through the radio. I would flip coins to predict the future, and now that I think on it, it feels perhaps a bit silly but was quite real at the time.

All those symptoms: paranoia, delusions, delusions etc, about sum it up for the psychotic component of Schizoaffective disorder, leaving the mood disorder type symptoms that also make up this disorder.

An example of a common mood disorder is Bipolar Disorder, also known as Manic Depression. A lot of people with Schizoaffective Disorder are initially diagnosed incorrectly with Bipolar Disorder, just like I was. There is also something called Bipolar with Psychosis, which was my diagnosis until I further described the extent of what I was experiencing to my psychiatrist.

There are two kinds of Bipolar Disorder, Bipolar I and Bipolar II. The main difference is that Bipolar 1 has more serious mania, the kind people often become hospitalized for. Bipolar II features hypomania, which is often less intense. The mania I experience is hypomania, and it manifests mostly for me as irritability or anger.

Mania can cause a person to make impulsive decisions, like with money or their sexuality, or even gambling. They can be euphoric or irritable. The phrase “flying by the seat of your pants,’ always makes me think of someone experiencing mania. During a mania episode someone may also sleep less, which fuels into more episodes. Additionally it is a more common for someone in a manic state to abuse substances or alcohol.

I have abused alcohol in my life, and marijuana, but I never did anything like ‘hard’ like cocaine, LSD or heroin, which is good! I no longer consume alcohol at all, nor do I smoke weed. A clean, sober, and healthy lifestyle is key to treatment, and is one of my own personal values.

Another possible symptom of mania is one that people don’t always like to talk about: hypersexuality. When people are manic they sometimes make impulsive decisions about sex, do things they wouldn’t normally do, and get themselves into bad situations. They might get overly into pornography, or have sex with people without thinking it through first. They might have unprotected or unsafe sex, which can cause serious and detrimental issues. It’s not even a far cry for someone to sleep with a sex worker, or have extramarital affairs. Sex while under the influence of mania, can become quite problematic.

I am including some examples of my own experiences with hypersexuality, which is a little embarrassing considering my parents will surely potentially read this, but I feel like I need to in order to address some of the stigma that comes with this symptom. You can’t address a symptom if you’re ashamed of it!

There are other different ways you can experience mania. You can be euphoric, feeling good, but still making choices you normally wouldn’t. When I’m euphoric, I like kissing strangers, spending a lot of money, and listening to loud music. You can also be irritable and it can make you a little hard to be around. I hate to admit it, but I’m usually the latter.

There is an example of a crime show my mother used to watch, where one woman experiencing mania, drove fast into snow because it amazed and pleased her and ended up crashing her car. My therapist talked once of someone singing showtunes outside while nude. The euphoria might feel enjoyable compared to the potential irritability, but can cause similar problems in it’s wake.

Most of the time when I’m manic, I am overly cranky, and will fly off the handle without meaning to, because I simply just become so angry. It’s best to be preventative with relaxation techniques and a plan, because once I get to a certain point, I find it impossible to stop. It really sucks, because I don’t like being that way or feeling so out of control, and frequently feel quite ashamed of myself.

Mania is intense. When I’m manic, I talk quickly and intensely. I have trouble sleeping. Some people don’t eat when they are manic. It’s a dangerous state to be in, because you don’t think things through, and don’t always take the best care of yourself.

Dysphoric mania is another type of mania you can experience. Basically, you are depressed and manic simultaneously. I hate these episodes most of all because one minute I’m angry, the next I am crying. It’s miserable to experience Dysphoric mania.

You can also have delusions of grandiosity, which I think is more Bipolar I territory. An example of grandiosity are those people you see on talk shows who think they are actually Jesus, or meant to save the world from aliens or something. They have extra high opinions of themselves, and believe something that isn’t true. A whooping two thirds of people with Bipolar I will experience this kind of delusion. I can’t imagine how their loved ones feel, that’s got to be tricky to deal with someone experiencing something like that! I don’t think I have really experienced delusions of grandiosity in my life, which I feel fortunate about.

Now that we have thoroughly covered mania, let’s talk about the other part of the mood disorder component. With this illness, and the ones similar to it, what goes up must come down!

The low to mania’s high is depression. Many people are already familiar with depression especially since it’s common, and also probably because there are so many different kinds; like clinical depression, postpartum or even psychotic depression that comes with psychosis. There’s also something called persistent depressive disorder, which can last up to two years. Man, that’s no fun! People even get something called Seasonal Affective Disorder where the seasonal changes in weather, usually to colder temperatures, make them feel depressed.

When someone has depression, they neglect themselves because they feel hopeless. I’ve always characterized my depression as feeling like I’m a horrible person, and not wanting to make myself look nice, or do the dishes. People often neglect their personal hygiene and other basic needs when they are depressed.

People with depression sometimes eat too much, or not enough. They no longer find joy in the things that usually make them happy. Their sleep is disrupted because they either don’t sleep enough or sleep a lot. I used to sleep a lot on the couch during the day when I had a bad bout of depression, but Mom would always encourage me to get up and moving, which does typically help.

People with severe depression may even self harm, attempt, or commit suicide. It’s a terrible thing, and much too common. According to the World Health Organization, 800,000 people die every year worldwide from suicide. Men are 3.5% more likely to die by suicide, and it affects a lot of different age groups and kinds of people. It is suspected that for every completed suicide, twenty other people will attempt.

I’ve considered it on occasion, but have never attempted or made a plan.

The National Suicide Prevention Hotline is 800 273 8255.

Changing from mania to depression is basically what Bipolar Disorder is all about. I experience my mood swings daily, and I seem to change rather quickly, especially during an episode. I’ve been told I rapid cycle, meaning that in a twelve month period, I experience up to four episodes, which can include mania, hypomania, or depression. It’s entirely possible to experience daily or even hourly changes.

There’s been some discussion as to whether I have Bipolar II with severe psychosis and rapid cycling, or Schizoaffective with rapid cycling, but the treatment is essentially the same, and it doesn’t matter to me much at all which is more accurate. My psychiatrist who I’ve been going to for twenty years has told me recently that she is certain about me having Schizoaffective disorder and OCD, and I do believe her, despite being told that rapid cycling is less common with this disorder.

To recap, Schizoaffective Disorder is a disorder that combines elements of symptoms that occur with both Schizophrenia and Bipolar disorder. It’s basically like having both, and isn’t as common as other illnesses at 0.3% of the population, but still a reasonably common disorder in terms of mental illnesses.

Schizophrenia affects 1.1% of US adults over eighteen, and Bipolar Disorder affects almost 1% of the population.

**Notes for the Chapter:**

> https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Schizoaffective-Disorder
> 
> https://www.mayoclinic.org/diseases-conditions/bipolar-disorder/symptoms-causes/syc-20355955
> 
> https://www.nimh.nih.gov/health/topics/depression/index.shtml
> 
> https://www.verywellmind.com/how-to-recognize-a-manic-or-hypomanic-episode-380316
> 
> https://www.verywellmind.com/grandiosity-in-bipolar-disorder-definition-and-stories-378818
> 
> https://www.healthline.com/health/mania#:~:text=Mania%20is%20a%20psychological%20condition,while%20in%20a%20manic%20episode.
> 
> https://www.mhanational.org/conditions/paranoia-and-delusional-disorders#:~:text=Paranoia%20involves%20intense%20anxious%20or,often%20present%20in%20psychotic%20disorders.
> 
> https://www.healthyplace.com/bipolar-disorder/psychosis/types-of-mania-in-bipolar-disorder
> 
> https://www.dbsalliance.org/education/bipolar-disorder/rapid-cycling-bipolar/#:~:text=When%20Rapid%20Cycling%20occurs%2C%20it,is%20called%20ultra%2Drapid%20cycling.
> 
> https://www.treatmentadvocacycenter.org/evidence-and-research/learn-more-about/25-schizophrenia-fact-sheet#:~:text=Schizophrenia%20is%20a%20chronic%20and%20severe%20neurological%20brain%20disorder%20estimated,untreated%20in%20any%20given%20year.
> 
> https://mentalillnesspolicy.org/medical/bipolar-facts.html#:~:text=Bipolar%20disorder%20is%20a%20neurobiological,1%20percent%20of%20the%20population.
> 
> https://americanaddictioncenters.org/co-occurring-disorders/drug-psychosis-comorbidity
> 
> https://www.nimh.nih.gov/health/topics/schizophrenia/raise/what-is-psychosis.shtml
> 
> https://www.who.int/mental_health/prevention/suicide/suicideprevent/en/


	3. So, what's OCD then?

**Notes for the Chapter:**

> This chapter gives a basic overview of OCD or Obsessive Compulsive disorder and my experiences with it. My sources are in the end note :)

I was also diagnosed as a child with OCD, so let's define this disorder as well.

NAMI also gives definition to Obsessive Compulsive Disorder. OCD frequently begins in childhood, like it did in my case. At 1.2% adults in the US affected, OCD is more prevalent than Schizoaffective disorder.

With OCD, you have a lot of intrusive thoughts repetitively. These thoughts are often bothersome and even disturbing. These are the obsessions. An example of an intrusive thought I’ve personally had occurred when my cat was in my lap, purring away. I thought “if I hurt her right now, she won’t see it coming.’ Now, I love my cat very dearly, and have no desire whatsoever to harm her. The thought made me physically sick. This is an example of an intrusive thought.

This is where the compulsions come in, and they rarely make sense. Often after a thought like that, people with OCD will perform certain actions to make the bad thought go away, even though we know it makes little sense. You might also seek reassurance, asking people if you are a bad person for having an intrusive thought. Reassurance seeking only helps for a brief moment, before the thoughts become troubling again. I've always googled a lot of things. "is it bad if..."

Whenever I was sick or stressed I would look up different illnesses to see if I had them, often to disastrous results. It's hard to be sick. Recently I convinced myself I had lithium sickness because I looked up the symptoms, and felt a lot of the symptoms, and decided I was in fact dying. After a $100 ER visit, (not a totally outrageous amount for a copay, but more than I could comfortably afford at that time) it was found that I was low on potassium, and not dying from lithium toxicity. The doctor was very nice, assured me that since I had all the symptoms, and was on fairly high doses of my meds, that it was wise of me to have gotten checked out. I cried, because I felt foolish for working myself into a lather, even though i truly did feel sick. Guilt is big for me, and for people with OCD.

OCD begins often in childhood, like it did with me.

I was prone to grouping things into certain numbers. Numbers were something that mattered a lot to me. I used to watch the news in the morning, and group the headlines on the TV screen into threes, and would feel strangely upset if the story changed before I could finish.

I had (and still have) horrible anxiety, and a fear of germs. I washed my hands until they cracked and bled. If something was dirty or contaminated, I would feel my hands tingling if I touched it, and had to wash them right away. The Covid19 Pandemic of 2020 totally messed me up, even worse so, when my entire family caught it. My dad was hospitalized. When they released him, I scrubbed the house top to bottom with bleach because I was scared he'd get another infection. My hands bled from it. Germs scare me.

My sister has OCD, and one time a belt of hers become ‘contaminated’ and when I picked it up off the floor and set it on her dresser she became very distressed, because everything on the dresser was now contaminated. She was so upset that she was inconsolable. People will say they are OCD because they like things clean and orderly, but they don’t always understand the sharp, terrible and urgent stress that comes with something becoming contaminated. People say the same thing about bipolar disorder too. I always hear the joke ‘the weather here is bipolar’ and feel a bit offended despite my best efforts.

OCD makes you feel like something needs to be fixed. If anything feels off, you have to fix it, and sometimes it’s like an itch you just can not scratch. If something didn’t feel right I would have to do it over and over, and it never felt ‘right,’ no matter how hard I tried. Fulfilling the compulsion actually made it worse.

I will have an OCD thought, and then I will have to keep checking to make sure they don’t come true. An example of this is a little embarrassing.

An OCD worry of mine is that when I go for a long walk, I fear I will forget to go to the bathroom before I leave, and that I will wet my pants. Granted I do drink about two liters of water a day, and I go for miles long walks, but shouldn’t peeing once be enough to assure me that I won’t have an accident? I will often need to pee twice before I leave, once at a stop on the walk, and once after returning home. I am always scared to buy a water on my walk. I know it’s not logical, but OCD makes you into a slave sometimes.

OCD does stuff like that. I’ve heard of people checking the stove over and over to make sure it’s off. It’s hard because I know some of my OCD worries don’t make any sense, but it’s hard to convince myself not to perform the compulsions.

The intrusive thoughts are rough. I often worry that I’m doing something wrong if I have a sexual or disturbing thought. Why am I having these thoughts? Just what exactly is wrong with me? I would search the internet obsessively for answers to prove nothing bad would happen, and that I was doing nothing wrong, but typically got mixed opinions and ended up feeling worse.

“If I’m supportive of gay rights, am I going to hell?”

“If I have a thought about hurting someone will I actually do it?”

  


One of my worst OCD worries involved a show where two teenagers that were friends took an interest to each other. The story and artwork for it were adorable, and reminded me of when I was young and falling in love. I thought it was cute, and liked them together in an age appropriate way.

Which of course my OCD magically transformed into intrusive thoughts of me being a pedophile. OCD is weird. It takes something normal and twists it until it doesn’t make sense anymore. Worrying about being a pedophile is actually a pretty common OCD worry.

OCD thrives off the taboo, the uncomfortable, the things that make us feel sick to our stomachs. Thoughts of disturbing themes keep popping up in your head until you start to doubt yourself. OCD is a bully, a downright thug!

People with OCD, frequenting reassurance seek. This basically means that they ask people questions to determine if they are doing something wrong.

“Do you think he/she are mad at me?”

“Am I a bad person for thinking that?”

“Do you think things will turn out okay?”

Etcetera. Reassurance seeking is tricky because the more you seek it, the worst you feel. Fullfilling an OCD compulsion ALWAYS makes it worse. When you deny it, there’s this terrible moment of anxiety, but then it fades and you feel better. It’s crucial to the treatment of OCD to deny your compulsions, feel that unpleasant feeling, and to let it pass.

I sometimes feel like I need to spend more effort on my OCD treatment. I used to think I neglected my OCD treatment because it paled in comparison to my other symptoms. Why was I worried about my germophobia and my bleeding hands, when there was what I believed to be a literal demon in my room? Can’t I just tackle the other beast that was the psychosis?

In reality, I avoid facing it, because OCD is just so perfectly miserable. Many times I have regretted not learning more about it, because I suspect that while my other disorder affects me a bit more, I am mistaken about OCD not being as big for me. OCD affects me more profoundly than I think I may realize.

My new goal is to work a little harder on my OCD. The intrusive thoughts really torment me at times. OCD is bad! I suspect it is one of the main sources of my anxiety.

**Notes for the Chapter:**

> https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Obsessive-compulsive-Disorder
> 
> https://www.helpguide.org/articles/anxiety/obssessive-compulsive-disorder-ocd.htm
> 
> https://www.apa.org/topics/anxiety#:~:text=Anxiety%20is%20an%20emotion%20characterized,certain%20situations%20out%20of%20worry.
> 
> https://theocdandanxietycenter.com/intrusive-thoughts/


	4. Anxiety’s Effect on the Body (for me specifically)

**Notes for the Chapter:**

> This chapter was a little hard for me to get out, because it's a hard thing I go through, but I do hope it can shed some light on my different anxiety based issues 
> 
> Sources are in my end note, thank you :)

Anxiety is a super common phenomenon! I don’t think anyone goes through life without facing anxiety at one point or another. It can be normal. Maybe you have a test coming up, or are facing changes at work. Or maybe you’re getting married and want it to be perfect, or you’re getting a medical procedure done. These types of anxiety are normal, but what some people with mental illnesses are a bit less logical, and a lot more severe.

Anxiety is described medically as being worried, tense, and is often accompanied by physical symptoms which can included trembling and increased heart rate. You can even have blood pressure issues from being anxious. I have always experienced a lot of anxiety, and the various physical issues that accompany it.

My boyfriend when I was in high school used to run to the nearest bathroom to barf when he was stressed. A lot of people I know have diarrhea when they are going through a lot. People get sick, like literally, sick from stress.

It can cause chest pains, even heart attacks. Stress is fortunately manageable with the right coping skills.

I’ve never had a heart attack, but on multiple occasions, I have had some major sharp pains in my chest that ended me in the ER. If anyone’s experienced this you know the drill. They attach the little sticky things to your chest and go “nope you’re fine.”

It’s fairly likely some people reading this know what I’m talking about, because from what I’ve heard, a lot of people going to the ER for chest pains are experiencing anxiety, not a heart attack. People having heart attacks don’t typically drive themselves to the ER, I think. Sometimes it’s hard to tell what’s going on with your body, and I think if something hurts, you should always get it checked out.

Stress can cause a lot of wear and tear on your body and should be taken seriously.

I have been on disability for two years because on multiple occasions I have experienced Vasovagal syncope and Convulsive syncope. If you’re not familiar, I’ll explain.

Vasovagal syncope can be brought on by extreme distress. Essentially, your entire body panics, and your blood pressure and heart beat suddenly drop, causing you to faint. Vasavagal syncope is also called Neurocardiogenic syncope. People sometimes experience this when they see blood. Mine was always attached to an anxious time or moment in my life.

I have fainted as a result of vasavagal syncope fifteen times. It’s definitely not fun, and because I mostly did it at work, I am currently on Social Security Disability. I have done it once or twice while on disability and not working, but if I take my Xanax and lie down when it starts to feel like I will, I can usually prevent falling. I use Xanax solely for this purpose, it’s a highly abused drug of course, but I always feel defeated when I take it, because it’s the only thing that helps when I’ve already tried to calm myself down. I feel like I should be able to calm down without it, but sometimes I just can’t

Don’t ever feel guilty for needing your meds. It’s no different from taking insulin or antibiotics. I have learned this over the years

Fainting feels weird. You feel super aware of your heart beat, it feels fast even though it’s actually dropping, and you think, okay here I go again. Dammit! Then people are standing over you, making phone calls, and you’re like why wasn’t I able to prevent this? I feel guilty when I faint, but sometimes I feel this sick sense of relief when I do. It’s like when your lying in bed at night with a terrible twisting stomachache, and after you run to your bathroom and finally throw up, you think ‘oh good, ok, now it’s over,’ because you finally know something that was going to happen anyways is over with.

I’d still take fainting any day though, over convulsive syncope. It is a type of syncope related to cerebral hypoxia that is accompanied by tonic, or myoclonic activity. I have had five of these episodes total

Tonic muscle contraction is where something like a force changes in your tonic smooth muscle tissue causing you to briefly pass out, and it looks like a seizure, but isn’t technically one. They don’t last long and are both multifocal and arrhythmic. The cause of these is that you’re not getting enough oxygen to you brain due to your distress. The fact that my body does this, quite frankly pisses me off!

Myclonic activity basically means you twitch and jerk like you’re having a seizure, and since that occurs in episodes of convulsive syncope, it’s often confused for true epileptic episodes.

In many epileptic episodes, the person experiencing this wets themselves and they additionally take a while to ‘come to’ and realize what has happened. I always feel and remember my episodes, and am completely aware the whole time.

My former roommate’s brother had a true seizure in front of me once. He was also nonverbal Autistic. I don’t think I’ll ever forget it. It was scary, and I feel really bad because I wasn’t sure he fully understood what was happening to him.

I have never had accidents during or afterwards, nor do I ever have trouble remembering the episodes, which is the main reason, I haven’t been diagnosed with epilepsy. What I have are not actually seizures.

I think the more I learn about my conditions the better I will able to keep myself healthy. Managing stress is important to everyone, but to me with what I have going on it’s even more essential! I plan to go into more depth about specific events later in this story.

**Notes for the Chapter:**

> https://www.neurology.org/search/convulsive%252Bsyncope%20exclude_meeting_abstracts%3A1
> 
> https://academic.oup.com/brain/article/137/2/576/282934
> 
> https://n.neurology.org/content/90/15/e1339
> 
> https://www.medlink.com/article/convulsive_syncope
> 
> https://medlineplus.gov/ency/article/001435.htm#:~:text=Cerebral%20hypoxia%20occurs%20when%20there,brain%2C%20called%20the%20cerebral%20hemispheres.
> 
> https://link.springer.com/referenceworkentry/10.1007%2F978-3-540-29678-2_6036#:~:text=%E2%80%9CTonic%E2%80%9D%20refers%20to%20a%20state,from%20control%20by%20external%20forces.
> 
> http://www.informatics.jax.org/vocab/gene_ontology/GO:0014820
> 
> https://medlineplus.gov/arrhythmia.html
> 
> https://www.epilepsy.com/learn/types-seizures/tonic-clonic-seizures
> 
> https://www.epilepsy.com/learn/types-seizures/clonic-seizures#:~:text=During%20a%20clonic%20seizure%2C%20jerking,Clonic%20seizures%20are%20rare.
> 
> https://www.ncbi.nlm.nih.gov/pmc/?term=vasovagal+syncope


	5. the logistics of it all

Despite my various medical problems, I never considered myself disabled, even though my illness made it impossible for me to handle the stress of working. I hope that someday I am healthy enough to work again, but honestly agree with my doctors that this may not happen.

When my mom helped me apply (I was in an episode at the time,) my therapist and psychiatrist warned me that it might take up to eighteen months to be approved, and that we might have to appeal a rejected application.

I got approved in three months. It was a little bit of a surprise, because I had heard it was hard to get on disability if you weren’t ‘truly disabled’ and that wasn’t how I thought of myself. When I told my therapist my hesitation with the label, she explained helpfully that I was approved so quickly because my mother had been very thorough about preparing my case. It helps, but I still didn’t want to tell people how I was getting my income now. I was doing some small quilt sales at the time and told people I was quilting from home for awhile, to avoid the ‘embarrassment’ of telling people I was on Social Security. These days I simply don’t care. I know it’s my best option, and no longer feel ashamed, but for a long time I didn’t want to need the help.

There isn’t a single thing wrong with being disabled. Not a thing, but it’s a very stigmatized label and I didn’t want it. I still kind of don’t. I realize that I would never look down on anyone in my same situation. I know a person in my situation and I love them and always try to be supportive. It's okay to be in my situation, just not okay to be _me._

I was just really depressed that I couldn't work anymore. I felt like somehow I had failed horribly. I am young and kinda cute and I have a baby face. People say 'oh you're such an attractive young woman, you look like you just turned twenty even though you are closer to thirty' and then they go why are you on disability? I can see it in their eyes because I am well spoken, and I have all my limbs. I worry they think I am taking advantage of their tax dollars when I would give anything not to need it.

In the beginning I would use the quilt thing or the 'in between thing' and now I just go "I'm on Disability because I hallucinate" which gets some pretty fun reactions. In all honestly people usually understand. People understand way better than I ever pictured they would. In any case, it sets me free.

I received a fair amount of retro pay when I was accepted. Retro pay is the money paid from the time of the onset of the disability to the date the application is approved, up to twelve months. I received a little over two grand in two payments.

I used my retro-pay for various built up expenses, including some dental work I had neglected. I had like, literally twelve cavities. Yikes! I wanted to do something responsible with the money. You have to spend the retro-pay by a certain point. Currently I am receiving Disability and Supplemental insurance, and I get about eight hundred a month.

People sometimes think of Disability as free money, and talk about people sometimes abusing the system, both of which can be true. However being on disability comes with many rules. I’m not allowed to have more than two thousand at a time in resources. If I didn’t live at home, I’m not sure I could afford it to have a regular house. The rent where I live is over a thousand average, so I would have to apply for section eight if I moved out.

I think they do do like sliding scale stuff, but I don't feel like I should live on my own with my illness, especially if I faint and like... hit my head. Ick!

If I inherited money or was left property, or even sold a quilt for a big sun I would legally be obligated to report it so they can reduce my deposit for that month. If I ever published this as a book (which I doubt) any money made selling this has to be taken into account. If I were to get married, my income might change if my spouse makes a certain amount of money.

My parents have talked about how when they die, they will leave the house to my sister, so that it doesn't affect me negatively. I will be able to live here, and split expenses with my elder sister I live at home, because quite frankly with my illness, I don’t think I could live on my own. I need my support system around me, and the money I get isn’t necessarily sufficient to survive on. My family consists of very nice people, who I credit a chunk of my success to. I'm excited to write about them.

I pay my parents some rent, contribute to groceries, and pay all my own co-pays and pay for all my personal items. We get along (for the most part with some bickering), and everyone contributes, so it doesn’t bother me to live at home. We help each other out. If you live alone and you throw up or have a nightmare, who comes and checks on you, after all?

I was pretty old when I realized that not everyone has that kind of family. 

My mom provides me with insurance. She has really good insurance through her work, and every year on my birthday she and my psychiatrist fill out paperwork saying that I am disabled and that I am allowed one more year of coverage under her plan. My rent basically only covers the premium she pays. I have to do this, because twenty-six is the cut off for being on her plan, and I am of course older (despite my baby face) I’m fortunate that her plan has this exception.

I am good with money and very responsible with it. When I was younger I’d spend every last dime on stupid things, but I’ve learned to be more frugal over the years. I write all my small expenses in a journal, from makeup to a latte at the coffee shop. I write my big expenses (anything over thirty dollars) in a monthly document that I save on my flash-drive. I have records for the entire two years I’ve been on disability.

There have been times where a Schizophrenic friend of mine was struggling financially and I helped her out, perhaps a wee bit more than I could have afforded to. It's a soft spot of mine, and sometimes we need to harden up and encourage people to solve their own problems. You will hear a LOT about this friend. Even as I write this I know that wherever she is currently, she's probably either not on her meds or has only been back on for a week. I worry about her all the time, but if someone won't follow treatment, there are limits to how much you can help. It's extremely sad.

Anyways... 

I get enough each month that I don’t go broke by the end of it, but again, I’m required to stay under two grand, and I do. I’m good at following rules, and have a healthy respect for authority. I’m so grateful I can receive disability. If I didn’t, I’d be relying on my parents more than I already do now, and that would feel awful to me, although I don’t condemn anyone else needing to do so.

I am treatment and med compliant, and I live with my parents, and older sister. I pay rent, and have taken it upon myself to keep the house clean and cook dinner frequently to help my family since they are all busy with work. I clean daily, I usually at least sweep, do laundry, the dishes, and vacuum near my conure’s cage because he likes to throw his pellets.

I can never repay my parents for everything they’ve done for me, but I’d like to try and be a well oiled cog in the machine and not a fainty, angry, squeaky wheel.

It’s a pretty nice life, but I struggle, nonetheless.

I purposely introduced myself the way I did, putting my hobbies and interests before my diagnosis, because my illness does not, and will never, define me. My illness is not who I am, even if it affects so much of my day to day life. I am more than my illness.

That being said, I’d like to tell you guys about how I had a childhood onset of Schizoaffective disorder and OCD. I wanted to write this book because my case is a little unusual. I’ve read that the percentage of people who have this disorder is less that half a percent. Idk how many poor people have it then.... What's the world population right now, Alexa? 

Just kidding.

I’m not a typical case, and I think that there need to be more books on Schizoaffective disorder period, because when you look for books on it, they are really hard to find. As far as I’m concerned, it is my duty to share what I’ve been through and what I’ve learned.I have the extreme luxury of both self awareness and early intervention and I’m hoping it’ll help at least one person. I hope you are that someone.


End file.
